Ulcerative Colitis Tips


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Being a High School Student with UC and…Kidney Stones?

I was diagnosed at 14 and I am from the US. I am almost 18 now.

Medications: Prednisone, Lialda, 6-mp, Asacol enemas

My Story:

I was first diagnosed with ulcerative colitis at 14 and I am now almost 18. I first started showing symptoms in January 2007 when I was in 8th grade. I was not formally diagnosed until May 2007 and that it when I started treatment. I did prednisone and 6-mp first but nothing was working and my second colonoscopy in October 2007 showed the colitis had spread farther in my colon. Finally in March 2008, my parents took me for a second opinion at UNC Childrens (I was at Duke Childrens) and explore some other treatment options. I was then put a combination of 6-mp, Lialda, and prednisone which did the trick and I was able to come off the steroids fairly quickly. I was formally put in remission that summer but little did I know what was going to happen that fall from going unsuccessfully treated for so long.

First, I would like to talk about being a high school student with UC. During my first flare, I was going 8+ times just during the time I was at school that day. It was so embarrassing having to get up and leave multiple times a class and then the only option was the girls bathroom which never was empty. The stress and anxiety did not help and some days I just couldn’t bare to leave my house. I was so happy that I was finally able to get to remission before going back to school for my sophomore year and be healthy…well, that was short lived

October 6th, 2008 was the day I had my first kidney stone. I was at school and started feeling this achy pain in my back which gradually got worse. I thought it was cramps, then UC pain and finally it became so unbearable I had to go home. I was taken to the doctor immediately because my symptoms were similar to that of appendicitis (acute pain, vomiting, fever). The did a CT and said that I had a kidney stone, not appendicitis.

Since that day, I have had 12 kidney stones. My last one was at the beginning of October 2010. The theory behind why I created them is during the prolonged period I went untreated for UC, the severe dehydration made my kidneys form them. A question I have is are there any other people with UC that have had stones happen with their colitis??? It makes sense and I do believe that is why since I always have had a balanced diet and no family history of them. I really want to avoid making any more of them because they are so painful and I have passed every single one by myself with little to no pain medication mostly.

Now I am in my senior year of high school and have been accepted into my first choice college for next year. The reason I found this website is because I just entered another flare of UC. It has been strange and much worse than the first one since I have constant vomiting and extreme fatigue for almost 10 days now. I have no idea why this just all of a sudden picked up again with no warning. I have been put back on the prednisone along with increased doses of the Lialda and 6-mp (I have been taking these both for maintenance this entire time). I have just really had a hard time with this second flare. It has been almost impossible to function at school and I can’t keep any good amount of food down. I’m really worried about missing school and jeopardizing college due to all of this. I need some advice on what to do and just overall support from people who actually know what its like. None of my friends or other people at school really know or understand what is going on because it has been so long since freshman year. I wish I could just say “I have UC” but no teenager knows what this is which would require me to explain it to them. That I know would be way too embarrassing to talk about what actually goes on. I feel trapped within my own body, if that makes any sense.

I appreciate this site letting me vent, I really need it right now!

Erin




2 Responses to Being a High School Student with UC and…Kidney Stones?

  1. Brad November 19, 2010 at 7:43 pm #

    Sorry to hear that you were so young when you got UC I was a year out of high school when I was diagnosed. I had a kidney stone once I had severe pain in my back as well went to the ER, I thought I was dehydrated they gave me a bag of fluid and did a CT scan and it was a kidney stone. I got a Rx for some pain killers which got me through it. It was terribly painful also caused me vomiting as well. I salute you for making it through so many without pain meds. As for college try to schedule your classes around the time of day when your UC is least active. later in the afternoon my UC would settle down so evening classes worked well for me. Also see what is available online i’ve been taking all online classes for the past 3-4 semesters. Its hard to take a full load and keep all the online stuff straight and caught up so I’ve been moving at a snails pace 4yrs on a associates degree, although I have taken a few classes that count toward a bachelors degree and dont count toward my associates. Online classes tho have been a savior without them I would have wasted several years. One semester I was hospitalized for 3 weeks and had to drop all but my 1 online class so that was another benefit. Good luck with everything, Brad.

  2. Linda November 20, 2010 at 7:36 pm #

    Hi Erin, I feel so bad for you my dear. My 6 year old son has UC, and I worry constantly about him being embarrassed at school and/or during social activities. However, he is only in kindergarten, so, I can’t imagine how you feel being a senior in high school and trying to avoid having to explain yourself when you are always going to the bathroom and in pain. it’s been a long time since i’ve been in high school, but i do remember how difficult it could be. even harder for you with uc. My son has not had any kidney stones, but, he was just diagnosed april 2010. he is in a flare right now too. we are trying to taper him off of prednisone for the 3rd time, and every time we get him under 2 ml, he starts a flare. he also takes 50 mg imuran, and remicade infusion every 6 weeks. he has had 5 treatments now, but has always started flaring two weeks before his next treatment. it is a lot for him to go through. my husband and i try to be as supportive as possible with him and i hope your family is the same with you. we have been doing the specific carbohydrate diet with him for 2 1/2 months now, and have seen definite improvement! before, during a flare, he was having diarhea with blood and mucus 10 to 15 times a day, now during a flare, it is down to 5 to 7 times a day and not waking him up at night! i always thought how evil of uc to not even allow your body to sleep overnight! hang in there, you are strong and you can beat uc! good luck with college! take Brad’s advice about online classes. my husband got his bachelor’s degree with all online classes. he is now working on his master’s degree with online courses.

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